DRAFT AGENDA - ASXL Conference
Friday, July 19th
Family Day
- Meet & Greet - Opportunities to connect with other ASXL families and break out by syndrome
- Informational Workshops
- Parent Panel
- Equipment & Therapy Exhibits
- ASXL Family Dinner
Professional Day (Scientists & Researchers)
- Genetics
- Modulation of H2A Monouniquination and Targeting
- Developmental Models and Mechanisms
- Models to Investigate Clinical Features
Saturday, July 20th - Medical Research & Family Day
Guest Presentations
- Comprehensive Evaluation of Clincial Features for ASXL Related Disorders
- Gastroenterology & Growth
- Sleep
- Genetics
- Pallataive Care
- Ears/Nose/Throat
- Endocrinology
- Behavioral issues
Break out sessions
- Focus groups to share experiences on different subjects with specialist facilitators
- Q&A with medical specialists from guest presentations
Biobanking
- Simons VIP & ASXL Registry - sample collection
- Registry Enrollment
Meals
- Catered lunch for families and professionals
- Family Dinner - Each ASXL Syndrome group will have a separate gathering